Tuesday, April 21, 2009

Update for April

Things have been busy for me with end of term – the usual avalanche of assignments and grading to complete.

There have been a few developments in terms of our ongoing treatment battles. The Toronto Lyme specialist did turn down the referral as I figured might happen, as he didn’t believe he would be able to adequately monitor Xian’s treatment from a distance. He’s not accepted any of the other Alberta referrals, so it looks like at the moment he is only taking Ontario patients. He did make some treatment suggestions for a young man in Alberta, so am hoping this may happen for Xian (more on that later).

I provided an update to the retired BC Lyme specialist who has consulted (for free!) on Xian’s case. He made some testing suggestions – tests that should be done in Canada, as those results could help in better access to treatment (though not necessarily, as I have heard from others). He also said that Xian should be considered for a course of IV antibiotics, given the remaining cognitive issues. I’d mentioned that in the speech/language testing and the cognitive testing done by the educational psychologist, while Xian was showing areas where she has improved significantly, areas known to be linked to neuroborreliosis remain impacted – memory/focusing problems (e.g. Xian is unable to repeat/copy a complex sentence verbally, because she forgets all but the beginning), word finding problems, and a number of problems with executive function (known to be frontal lobe related).

Two weeks ago the child psychiatrist’s office called to see if I could come in the next day to meet with her. This turned out to be fairly positive. Dr. W. had contacted the pediatrician to get to the bottom of things. From what Dr. W. reported, it seemed like she did a good job of advocating for Xian – she asked the ped if she disagreed that the medications were working or didn’t believe Xian was getting better, and also asked what we were expected to do since Xian is not yet fully well. It sounds like the crux of the problem is that the pediatrician is concerned about not having any direction or much information in regards to Xian’s treatment. (While she told me via the nurse that she wasn’t willing to deal with Dr. Murakami – the BC Lyme specialist, or contact the doctor in Toronto for advice, it sounds like she was reconsidering that in her conversation with the psychiatrist.) The psychiatrist said she would contact the Toronto specialist herself and see if she could get any recommendations – and she seemed willing to contact Dr. Murakami, if needed, as well. I also told her that we’re at the point where we cannot keep going to Seattle – both financially and in terms of the difficulties it creates for work – especially if we continue not to receive reimbursement of any kind. So, while I’ll take Xian in a few weeks, it is mainly to keep the orals going until something is sorted out here---and I'm at the point where I'm willing to talk to whatever media or political representative I have to in order to get something happening. I’m hoping the Seattle doctor will have some idea whether there are other oral antibiotic options that might deal with the neuro issues – though I think the problems is getting something that adequately crosses the blood brain barrier.

We have an appointment with the child psychiatrist the week after we get back from Seattle – hopefully there will be some sort of plan, or at least some possibilities in terms of direction. Dr. W. also told me something interesting – she did have some contact with the pediatric infectious diseases folks and they apparently told her Xian had many Lyme tests. Well, I asked for copies of all the testing done when she was in hospital, and have seen copies of all requisitions afterwards, and I have not a single record of a Lyme test. So, unless there’s something someone hasn’t been telling me, it is an outright lie. I will be checking with hospital general records and with the pediatrician’s office to check on that, in any case. I have to wonder if they are really simply more interested in covering themselves than actually getting Xian well. In reflection, when I met with the ID doctor in November, rather than simply giving consent for the pediatrician to treat, what should have been done was to suggest some treatment options and possibly IV at that time. Dr. W. also seemed to believe that IV was a reasonable expectation in terms of clearing the last layers of symptoms – and she also noticed the executive function problems in terms of what Xian does even when she is in the psychiatrist's office.

Anyway…it seems that things can never be easy for Xian, even in spite of having a clear response to treatment thus far. It seems I will have to fight all the way to get her completely well. Xian is quite aware of how she is changed since getting sick. This morning when I was telling her again that the next thing she needed to do was to get her boots and coat on (she generally forgets the sequence of all tasks, every day and ends up wandering around aimlessly until reminded) she said, “Mom, it’s not on purpose. The bacteria makes me always forget things.” While I know she hopes she will get better, she seems more or less resigned to her new way of functioning.

Yesterday I heard a very good radio program on Lyme on NPR (U.S. – National Public Radio) on the Diane Rehm show. She was a very good moderator/interviewer and had the author of Cure Unknown (Pamela Weinstraub), a Lyme Literate doctor/researcher (Dr. Schor) and an IDSA doctor whose name I have forgotten.Here is a link to where the program was archived: http://wamu.org/programs/dr/

I am expecting to see more in the area of Lyme in the news – with spring coming, the documentary Under Our Skin due to hit theatres, the movie Lymelife coming out (doesn’t address the controversies, but shows a family where Lyme is a factor), and the submissions for the review of the IDSA Lyme guideline, some of which will be public.

My only hope is that some of these things may come quickly enough to help Xian – in my nightmares I can see us continually dealing with inadequate treatment and relapse for years to come and Xian losing more and more of years of schooling and parts of her childhood and ending up with permanent brain damage from an inadequately treated infection. While she has come a long way since last summer, we are not at the end of this yet and it is difficult to see her struggle in ways she never did prior to getting sick. While you are not likely to see doctors stop part way through a surgery, leave things half done and sew the patient back up, it seems to be the typical way that Lyme treatment is addressed.

I'm so glad you found the time and focus, in the midst of these busy days, to give us this thorough update. Yes oh yes--as amazing as what you have accomplished and how Xian has progressed is, it is clear that you have big challenges and hurdles you continue to confront as you advocate for Xian.

I continue to be in awe of your fierce advocacy for your sweet Xian and for others who have this devasting disease! I know you will find the strength and the resolve to push forward, to look at all avenues to get Xian the treatment she needs. May it go smoother than expected--you have had far more than your fair share of hardships and obstacles through it all.Persevere Linda!Blessings,Marcia (a fellow SWT group member) from WisconsinHappy Happy Mommy to Sara Marina and Kate, both adopted from Taraz Kazakhstan

Hello Linda,I thought of you this past week on Mother's Day, how you have been an amazing mother to Xian and Rachel. Somehow I recalled that your posts of around a year ago (May 2008) were the point at which you first turned your focus toward Lyme's Disease, even when others were looking elsewhere---I went back and checked the posts from that time to confirm my recollection was correct.And as I re-read those posts, I thought of how you should read them to remind yourself of the AMAZING progress you have accomplished. I'm guessing it is very hard for you to look back on that time of Xian's devasting decline and grave health situation, and upon your desperate search for answers and, literally, a way to save her life. But I suggest you go back to those posts, at least to skim them and get an overview---because you will amaze yourself at how very far you've come. You are truly a hero.With my continued prayers,Marcia